Month: July 2010

UPS delivered pieces of our new reality today. After Claire used the wedge last week to lay on her stomach, I began ordering equipment for our home therapy sessions. Our wedges arrived today, one six inches high, the other eight. It was the first piece of equipment that was delivered.

As we begin to forecast what the future looks like for the near term months, we are making a list of the things we will need to maximize Claire’s recovery potential. We are eager to have Claire home at the appropriate time, and we know that when she is here we will be leading the majority of her therapy. In addition to our wedges we have ordered a new bed/crib, tumbling mat, weighted blanket and vibration snake. We expect the list to grow.

This planning helps us regain some feelings of control. We have a lot of uncertainty about Claire’s recovery potential, but we know that we can control the environment and effort put toward it. The researching, buying and organizing is cathartic for me.

Claire’s exhibited improvement today was more therapeutic than my shopping list. Tiffany and I took Claire for a walk outside and it was her best outing to date. She showed very little agitation and seemed to enjoy the sun on her skin. We managed to catch the one hour in the metroplex when it was not raining: while humid, the walk was nice and temperate.

Claire’s walk followed a long day of rest. She slept very well last night and woke up only once for an hour. She napped through the early morning, only waking to confirm the resounding German victory over Argentina. The rest did her good.

We made a slight change to Claire’s feeding schedule today. Claire has been eating via G-tube every four hours with each feed taking two hours to cycle. This has left us with few hours to do therapy, get baths and take walks. We experimented with accelerated feeds so that Claire only takes an hour to eat instead of two. She did great. No reflux. No aggravated stomach issues. We will keep the two hour cycle through the night, but if looks like we’ll be able to reclaim some working time during the day.

We hope everyone is enjoying their weekend. Thank you for your prayers and support. Happy 4th!

Claire’s elbows were cast today. The occupational therapist fitted Claire for some hard plastic elbow splints yesterday and they didn’t work very well: they left red stress marks on her elbows that didn’t go away for several hours. So we moved to plan B. We spent an hour and a half today padding her arms and wrapping them in hot pink casting strips. Her left arm is showing the most tone, so it received the heftiest treatment. She now has hot pink Popeye forearms.

We had to cut the casts off after they set. Claire wasn’t a fan. The saw was noisy and the vibration was odd. She protested despite plugging her ears for her.

We did learn that she didn’t protest as much when we covered her ears. This was valuable information and led to a solution we should have considered sooner. Claire has been having trouble sleeping at night because of the in-and-out nature of the night nurses. She’s sensitive to the slightest noises. Some of the nurses are very good at being quiet. Others are more heavy-handed. The problem is that we never know who we are going to get each night. Because Claire responded so well to having her ears plugged, I ran to Target and got some of the compressible ear plugs. We cut them down to Claire-size and they’ve worked well at calming her down and muffling punctuated sounds. I hope they work tonight.

We were assigned an appointment date next week for Claire to try some pool therapy. It’s a bigger step for Tiffany and me, but we can’t think of a better, more safe opportunity to get Claire in the water again. We also hope the buoyancy and warmth with help calm her further and reduce her muscle tone. The right side of her body is not exhibited much tone; however, the left side continues to challenge us. She hasn’t lost any range of motion and now we’re looking for similar improvements we’ve seen on her right side.

Claire has a more challenged night of sleep last night. She was very lethargic today and struggled to keep her eyes open. The overcast day and afternoon showers contributed to the general malaise in Claire’s room. We hope Claire’s shower tonight will wash away some of the dreary feelings and prep her for a solid night of sleep.

Thank you for your prayers and support. We hope your Independence Day weekend brings some great rest and relaxation with friends and family.

Autumn had a breakdown today. The drawn curtains and somber mood took its toll on her while Claire cried in the background. She needed to escape.

OCH has a nice garden sitting area that is conducive to emotional talks. Between tears and sniffles, Autumn told me that she wanted her sister back just the way she was. She remembered how Claire would hold Autumn’s hand at night before they went to sleep. She remembered how excited Claire would be to see Autumn after school days ended. She remembered a time that Claire was angry and Autumn laughed at her. She told me how sad she was that she’d done that to Claire. She told me how much she missed Claire. She told me how often she hopes that this is all a dream.

I recall all the times I’ve told my girls that “It’s all right,” or “I’ll take care of it.” I couldn’t reassure Autumn with those platitudes this time. Autumn wants to know that her baby sister will be the same. It’s hard to tell your eight year old daughter that she has to wait and see if her little sister will be how she remembered. We’re trying to balance having honest, candid discussions with Autumn and Heidi while still protecting their claim to childhood. It’s hard.

We decided to take a walk with Claire to decompress. Heidi had made a 4th of July visor for Claire to wear. We laughed when we put it on her, but we were surprised at how well it worked for our walk.

Claire also got some new equipment upgrades. Claire is sporting some new splints for her arms, feet and elbows now. She’s graduated from her old splints because her muscle spacticity is improving. She is now in the middle school of splints: we hope she moves on to high school splints soon which are custom fitted.

Claire also got a sporty new weighted vest. The weight and pressure help Claire feel secure and safe. We hope it helps further moderate her agitation levels.

Overall, there were not any major news events today. Claire continues to do her exercises with Tiffany and me and reluctantly attends her therapy sessions. Her flexibility and range of motion continues to improve. Her agitation continues to moderate. We celebrate these little victories. Thank you for celebrating with us.